By Katherine Macfarlane
Public health in the U.S. has collapsed. In its place, we are left with an insufficient, impoverished alternative: personal crusades. This essay describes the cost of casting aside what is best for the public’s health in favor of individual choice, especially to those who are high-risk for serious illness or death from COVID-19. It explores how they must negotiate public health measures on their own.
The COVID-19 pandemic has created a constant wave of disheartening public health news, making it tempting to mark the first day of the pandemic as public health’s breaking point. Yet the ineffective public health response to COVID-19 is the result of decades of inadequate investment that created a “patchwork system woefully ill-prepared to engage citizens, counteract misinformation” and, in the case of COVID-19, to test, contact trace, and vaccinate.
Still, COVID-19 is a useful prism through which to examine the collapse of a particular aspect of public health: the fact that it concerns itself with the public. Charles Edward Amory Winslow defined public health as “the science and art of preventing disease, prolonging life, and promoting health through the organized efforts and informed choices of society, organizations, public and private, communities, and individuals.” In other words, public health is a group project. Delegating public health choices to individuals during the COVID-19 pandemic is an abandonment of the field’s quintessential commitment to organized, large-scale efforts on behalf of everyone.
Consider, for example, masking protocol. Even though one-way masking offers some protection, “masks work best to prevent the spread of SARS-CoV-2 when everyone wears one.” Yet the language of individualism permeates pandemic masking policy. “People may choose to mask at any time,” says the U.S. Centers for Disease Control and Prevention. In health care facilities, masking is a choice. The CDC advises that “[w]hen SARS-CoV-2 Community Transmission levels are not high, healthcare facilities could choose not to require universal source control.” Others “might also choose to continue using source control based on personal preference, informed by their perceived level of risk for infection based on their recent activities.” Individuals “at high risk for severe illness,” the CDC opines, “should wear the most protective form of source control they can that fits well and that they will wear consistently.” If masking protocol were guided by public health principles, it would not be presented as a personal choice, or a choice of any kind.
High-risk people whose health conditions require regular treatment in health care settings that have abandoned masking requirements have no choice. They must enter spaces where people are unmasked. What personalized public health measures can they turn to?
First, their health care providers could demand a return to masking in health care settings based on fundamental best practices. They might demand masking in their offices as a function of “personalized medicine,” through which treatment strategies must be, at a minimum, sensitive and tailored to each individual patient’s needs. Patient-centered care principles would also support the decision to mask.
Health care providers might also look to “trauma-informed care” to protect their high-risk patients. A trauma-informed environment meets patient needs “in a safe, collaborative, and compassionate manner,” and prevents against treatment practices that “retraumatize” those who have already experienced trauma and are now seeking medical help. When a health care setting drops its masking requirement, high-risk patients learn that their safety does not come first, a disconcerting realization that might itself lead to trauma. Of course, not every health care provider has the ability to alter the masking practices followed by the hospital or medical practice in which they work. High-risk people labor in unsafe health care settings, too, and may not be in a position to advocate for their patients, or themselves.
Perhaps patients could simply ask their health care providers to mask. Imagine how such an exchange might unfold between a high-risk patient and an unwilling phlebotomist. The patient must have blood drawn so that tests can be run to determine if the patient’s treatment is working. Not all blood draws are alike — there are ways to make a blood draw more or less painful. The power imbalance in that moment never favors the patient, who has to weigh the benefits of masking against the perils of a sharp needle in an angry hand.
The Americans with Disabilities Act (ADA) applies in health care settings and offers some theoretical legal protection, requiring “full and equal access to their health care services and facilities” as well as reasonable modification to “policies, practices, and procedures” when the modifications are necessary to make health care services accessible to people with disabilities and do not fundamentally alter the nature of the services being provided. A health care setting that has made mask-wearing optional could modify such a policy in settings in which high-risk people are present.
But how would a patient obtain a reasonable modification in practice? The patient could call a hospital before their arrival and ask for an ADA-based modification to the hospital’s mask-optional rule. The patient’s legal argument is sound. But hospitals know their power. A patient cannot easily hire a lawyer and obtain an injunction on Monday to ensure a safe infusion of chemotherapy on Tuesday. Not only is this option impractical, it is a quintessential example of what Liz Emens has described as discrimination admin: “the office-type work of contesting biased and unfair treatment” and of “requesting legally mandated accommodations.” Sick people do not have time to run to a courthouse. Being sick is hard enough.
I am skeptical as to whether any form of self-advocacy will work. I myself am a high-risk patient severely immunocompromised by the treatment I receive for an autoimmune disease. I am learned enough to contribute to this symposium, but powerless to change the masking rules in the health care settings I have no choice but to frequent. My personal public health crusade has failed.